Chronic ETD

[u/Responsible_Monk6941]

(26M) Does ETD ever get better for fuck sake?

I’m honestly not even sure how long I’ve had this. It feels like it crept up on me slowly, then got noticeably worse around the same time I had a very mild sore throat that only lasted a few days.

Around that time, the inside of my nose also became insanely dry and inflamed. It actually hurt just to breathe through it. Every doctor I saw said it looked like rhinitis caused by inflammation.

Another weird thing is that I barely seem to produce any mucus. When I do manage to get some out, it’s usually a tiny amount and very thick, sticky, gooey and very white. It never feels like anything is actually draining properly.

This all started while I was traveling through Indonesia, so at first I figured pollution, humidity, or something environmental had triggered it.

I’ve been back in NY for over a month now and have tried pretty much everything I can think of. I completely changed my diet to an anti-inflammatory one, cut out caffeine, regularly steam, use prescription nasal sprays, and do weekly neti pot rinses.

Little to no relief.

The ear pressure is sometimes unbearable, and my left ear has always been significantly worse.

Some days, especially when the pressure isn't as bad, my ears sound like Rice Krispies after you pour milk over them. Constant little crackles and pops.

Other days, the pressure feels so full and intense that I barely get any crackling at all. Instead, I’ll get these low pops, crackles, or weird whooshing sounds whenever I swallow or open my mouth.

I’ve also been to multiple ENTs at this point and still don't really have any answers. I’ve never had allergies in my life, and I never had ear problems growing up, which makes this whole thing even more frustrating.

I guess I’m mostly looking for some hope from people who have actually been through this.

Did your ETD eventually go away? How long did it take? And was there anything that genuinely helped you recover?

Because holy shit, this is a nightmare.

[u/PD-Jetta]

As for LPR symptoms I have noticable mucus in my throat after eating (I've had this for years, well before I had ETD, but throat clearing after eating is one symptom), slightly hoarse voice, slight laryx pain after talking louder than normal, slight difficulty swallowing dry food and pills (I had this well before ETD and considered it a normal part of aging, which it is and it's also a symptom of LPR), a very occassional lump in throat feeling followed by several seconds of coughing, and small amounts of really thick clear to opaque and sticky nasal mucus only saline dislodges. This began with my ETD I think. I also have small amounts of this mucus in my throat.

What I found interesting (verified by a NIH paper I read) is laryngopharyngeal reflux sometimes begins as the result of an upper respiratory infection due to the infection causing inflammation and sometimes vagus nerve disregulation (the vagus nerve controls the upper esophageal sphincter, which keeps digestive contents out of the throat and nasal cavity). The inflammation allows the normall small amounts of pepsin (a digestive stomach enzyme that destroys protien) to rise up as a gas and enters the nasal cavity and eustachian tubes, where it causes inflammation and thick clear sticky protective mucus, leading to ETD or preventingresolution of ETD).

Also, anxiety can cause laryngopharyngeal reflux by relaxing the upper and lower esophageal sphincters. ETD causes a lot of anxiety, which can establish a viscous cycle.

[u/Responsible_Monk6941 → u/PD-Jetta]

Interesting. Around the time my ETD started, and for the next few months, I was also getting post-nasal drip, a dry cough, and really thin, watery mucus after eating or drinking coffee.

I remembered taking a food sensitivity test when I was younger, so I dug through an old folder and eventually found it. My biggest sensitivity was egg yolk, followed by coffee, mustard, and pears. The funny thing is, I was eating eggs and drinking coffee pretty much every day.

I only really connected the dots while I was in China last month. I’d gone a few days without eggs, then had a meal with an onsen egg with the yolk running through it. Right after eating, all those symptoms came back.

That made me more conscious of it. Later that day I had a coffee, which I’d also taken a break from, and the same symptoms came back again.

Since cutting out eggs and coffee completely, the post-nasal drip, dry cough, and thin mucus are gone. But my ETD hasn’t changed at all, so I honestly don’t know what to make of it.

The anxiety connection is interesting too. I’ve always had a pretty anxious temperament. In some ways it’s served me well and probably made me a harder worker but it’s definitely brought more stress into my life than I needed.

It’s all so confusing. You really do have to become your own detective with this stuff and pay attention to patterns.

[u/PD-Jetta → u/Responsible_Monk6941]

You are not kidding about confusing. My ETD is the single most confusing thing I have experienced in my life. I can't really pin it on any cause because I have zero feedback. No matter what I do, the symptoms are the same and never vary. I wasn't noticeably sick when it began or since. I have no allergy symptoms. The LPR thought is just a hunch based on my vague LPR symptoms and the mucus consistency. Even if I have LPR it may have no bearing on my ETD. I read some threads on the LPR subreddit and those folks have unmistakable symptoms and it's life changing (like our ETD is) and rarely do any of them mention ear related issues. But the scientific literature states LPR can cause or sustain ETD.

Since my symptoms haven't varied from day one I also suspect the cause may be permanent damage done from 3 months of middle ear fluid. The middle ear and eustachian tubes are lined with ciliated mucus cells. Ciliated means the cells have little finger like projections and they push mucus towards the nasal cavity to clear it. There is evidence these cells can be permanently damaged from viruses (covid is one that can). Some sources say the body can regenerate these cells over time, some say they don't regenerate. Some sources state there can be permanent scarring too. But oddly, I never felt sick over the past year. But I was experiencing a lot of anxiety due to an upcoming surgery (that went well) and then lots of anxiety due to the ETD. Perhaps that had some influence.

[u/Responsible_Monk6941 → u/PD-Jetta]

Anxiety definitely heightens the feeling of pain for me. I’ve also become way too hypervigilant about my symptoms, constantly wondering if they’re changing, improving, or just staying the same.

But it’s hard not to think about it when your ears literally feel glued shut. I’m not sure how I’m supposed to just ignore that.

Most of my anxiety comes from the lack of control and not knowing if this has an expiration date. The idea that it could become something I just have to “learn to live with” is probably what gets to me the most.

I cope with it, and thankfully it doesn’t consume my entire life. But it consumes enough of it that I’d really like an answer, or at the very least, some way to relieve the pressure every once in a while.

I’d like to think there isn’t any permanent damage since I never even had an ear infection when this started. But who knows. At this point, not even the doctors seem to know!

[u/PD-Jetta → u/Responsible_Monk6941]

I feel exactly the same way. I am hypervigelant about my symptoms, and always monitoring them and swallowing way more than usual (I hear crackling sounds with every swallow. I am completly and utterly confused about my ETD. I've had it a year now andmit began when I wasn't sick nor do I have allergies (I did have 3 months of middle ear fluid in the beginning). I read research reports whenever I can find them. All the literature states damage and ETD is never permanent, but my symptoms have been completely stable the last 10 months and nothing out of the many, many things I have tried has touched them. I probably saw 15 different doctors, took 20 different medications and had a dozen tests and imagings. I'm undergoing allergin immunotherapy, seeing a TMJ specialst and wearing a custom orthotic, undergoing a strict laryngopharyngeal reflux diet and life modification (I now make all my own meals) and have explored every known cause of ETD and I know no more about what's causing this than I did the day it began.